Informing Parents About Newborn Screening...Informing Parents About Newborn Screening: Hidden...
Transcript of Informing Parents About Newborn Screening...Informing Parents About Newborn Screening: Hidden...
Informing Parents About Newborn Screening:
Hidden Problems, Practical Solutions
Terry Davis, PhDDepartment of Pediatrics &
Medicine
Louisiana State University Health Sciences Center-Shreveport
April 21, 2005
Quality: Top health care issue21st century*
• knowledge-based
• patient-centered
• systems minded
*IOM Quality Chasm: 2001
Newborn Screening Communication
NBS Communication Stages
Initial Screening
Retest
Parent informational & psychological needs vary
Confirmed Positive
NBS Parent Education Background
NBS parent education materials available in 49 of 51
states - mostly given in hospital
No national guidelines for content or dissemination
AAP-NBS Task Force recommends families be educated
during the prenatal/ perinatal periods
Prenatal NBS education is rare (class has limits)
Pediatricians rarely discuss initial screening with parents
NBS Communication Challenges
New technology/rapidly changing environment
State programs differ ( disorders screened, info
given, process of reporting results)
Parents/ public lack basic knowledge
Hospital birth visit a “fog” for most parents
Primary providers may lack up-to-date information,
patient education materials, time
Best practices yet to be identified
Hidden Barriers to Informing Parents about NBS
Patients/ providers/nurses/ state programs:Agendas/ communication styles/ knowledge level differ
Patients:Education/ Literacy/ LanguageHealth Literacy:
Capacity to• Obtain, process, understand basic health
information and services• Make appropriate health care decisions (act on
information)• Access/ navigate healthcare system
Education in the U.S. today
School drop-out rates
Russia 2%
Japan 5%
U.S.A. (16th) 29%
U.S. cities 35-45%
U.S. black students 50%
Job requirements in U.S.
20% 4 year college
65% Assoc. degree
15% minimum skills
½ of h.s. students can eventually get
a job that supports a family
14% 9th graders finish college in
6 years
Health communicationHot national topic
IOM: 2004 Report
• 90 million adults have trouble understanding and acting on health information
• Complex text must be simplified and attention paid to culture and language
Healthy People 2010
• Improve health communication/health literacy
JCAHO (1993); Balanced Budget Act (1997)• Patients must be given info they can understand
National Adult Literacy Survey
n = 26,000
• Most accurate portrait of literacy in U.S.
• Scored on 5 levels
• Levels 1 and 2 cannot:
o Use a bus schedule or bar graph
o Explain the difference in two types of employee benefits
o Write a simple letter explaining an error on a bill
1993 National Adult Literacy Survey
Level 3
Level 2
Level 1
Level 4Level 5 - 3%
17%32%
27%
21%Atlanta 38%Baltimore 38%Chicago 37%Los Angeles 37%New York 36%
High School grads
Who’s at Level 1 nationally?*
Medicare recipients 42%Medicaid recipients 41%
(over 1/3 births)
Low literacy LINKED to:†• poor health• lower quality care• medical errors• poor outcomes• disparities
LOWLITERATE
MARGINALLYLITERATE
LITERATE
* NALS, 1993 † AHRQ Evidence Report 2004
Low Literate Diabetic Patients Less Likely to Know Correct Management*
0 20 40 60 80 100
Percent
Need to Know:symptoms of low blood sugar (hypoglycemia)
Need to Do:correct action for hypoglycemic symptoms
*Williams et al., Archive of Internal Medicine, 1998
Low
ModerateHigh
Low
Moderate
High
Video
• 90 million Americans have trouble understanding and acting on health information
• Health information is often complex & unfamiliar to people of all education levels
• It’s easy to make a mistake
Mismatched CommunicationMismatched Communication
Provider Process/ State NBS Program: Giving information
Patient Process: Understanding, remembering, and acting on information
Patient Education: What We Know
Written materials, when used alone, will not adequately inform
Simplified materials are necessary but will not solve communication problems
Focus needs to be on “need-to-know” and “need-to do”
Work with patients to identify best practices
* IOM: Report on Health Literacy 2004
* AHRQ Report 2004
Vaccine Communication Materials
T Davis. Ambul Peds; Fredrickson, Davis. Pt Ed Counsel
Vaccine CommunicationPre and Post Materials
0%
20%
40%
60%
80%
100%
Verbal Teaching
Side EffectsRisks Contraindication
prepost*
T Davis et al, Ambulatory Pediatrics, 2002
* p < 0.001
HRSA Contract
Evaluate user-friendliness, including readability and cultural appropriateness, of NBS parent education materials in English and Spanish (49 programs)
Conduct listening groups of key stakeholders
Develop pamphlets in English & Spanish for parents
Work with NNSGRC to develop and evaluate educational tools for prenatal providers & toolkits for state programs
Davis T, et al. Pediatrics, in press.
Arnold C, Davis T, et al. Pediatrics, in press.
Gold Standard Readability: <6th Grade
8%16%
27%
0
10
20
30
40
50
<=6th 7th 8th-9th 10th-12th College
Brochure Readability
49%
Do Current Materials Work?
Readability is the tip of the iceberg.
Is the layout user-friendly?
Do illustrations convey the message?
Is the message clear?
Is the information manageable?
“Meant for Me”
Avoid a Common Mistake
Most patient education materials sequence information using:
Medical model
• Description of problem
• Statistics on incidence and prevalence (tables)
• Treatment forms and efficacy
Is more helpful to use:
Newspaper model
• Gives most important information first
Health belief model
• Your baby may be at risk
• There is something you can do about it
• Your baby will get personal benefits if you do
Focus Group Research
22 focus groups & 3 interviews:
• English- & Spanish-speaking parents of babies
recently screened
• Parents of babies who had a false positive
• Pediatric & prenatal care
providers
• State newborn screening
professionals
6 states n= 138
Parent Demographics(n = 51)
InsurancePrivate 23 (45%)Medicaid 23 (45%)No Insurance 5 (9%)
Ethnicity/ RaceBlack 22 (43%)White 22 (43%)Hispanic 7 (14%)
SexFemale 48 (94%)Male 3 (6%)
Age of Child 6 wks- 1 yr
Age of Parent 16-39
Provider Demographics(n = 78)
Ethnicity/ Race
White 64 (82%)
Black 9 (11%)
Hispanic 3 (4%)
Asian 2 (3%)
Sex
Female 43 (55%)
Male 35 (45%)
Ages 23-72 (range)
Health Profession
Family Physician 24 (31%)
Neonatologist 2 (3%)
Pediatrician 17 (22%)
OB/GYN 11 (14%)
Nurse Midwife 4 (5%)
Labor and Delivery Nurse 11 (14%)
Physician Assistant 5 (6%)
Nurse Practitioner 4 (5%)
Lessons Learned from Focus Groups
• Parents and providers had limited knowledge/ awareness of newborn screening- “not on the radar screen”
• Parents not familiar with term newborn screening
• Physicians did not know what NBS information parents were given in the hospital, none had read state brochure
• All stakeholders felt parents should 1st receive education prenatally “The hospital visit was a fog; the only thing I wanted to know was ‘is the baby ok?’”
• Physician and nurse education before discharge focused onpractical things e.g. breast feeding, crying, car seats
Lessons Learned from Focus Groups
• Parents wanted ‘heads up’ about initial & retesting 7-8 months pregnant “This is the best time because I am going to the doctor almost every week.”
• Parents wanted information orally from their primary provider with a pamphlet to take home “I like to have a brochure because you don’t always remember everything your doctor tells you.”
• Pamphlet needs to be to the point, “I just want it as short and as simple as possible”
• Prenatal providers indicated willingness to educate parents
• OB’s and FP’s more likely to incorporate NBS information if it was on the ACOG checklist
Parent Experiences
• NBS pamphlets often given in hospital with no oral information;pamphlet often “lost” in take home package “They give you so much information in the packet to take home with you, that you end up throwing most of it away.”
• Opinion mixed on “need to know” if result is negative. Most said, I don’t really care if every thing is o.k. Others: I want to make sure my baby’s test did not fall through the cracks
• Did not know state public health department was involved in testing and retesting. “I just kept trying to figure out how the health department got my name and knew I had just had a baby.”
List/ Description of Diseases
• Parents expressed little interest in detailed information on diseases or NBS program
• Parents did not read list of 32 diseases and descriptions; stopped reading when they realized they could not pronounce the word and had no basic knowledge of the disease, “I don’t want a lot of details.” “Put less information so people will read it. Make it more concise, less overwhelming.”
• Parents only interested in description of diseases when baby needed retest, then only in condition being tested “If my child has a test come back positive, I only want to know about that specific disease.”
• A few highly educated parents requested web links, and computersavvy moms turn to Google 1st when retesting is needed
“Need-to-know” Informationfor Parents
• All babies are screened
• Screening will benefit the baby
• Testing is safe- not harmful
• The baby may need to be retested
• Parents will be notified if retesting is needed
• Its important to act quickly if retesting is necessary
Cost and consent were not important
Parents more likely to keep high quality materials and throw away copied handouts
To be produced & distributed by AAP. Will be available as an electronic template for states to use or modify
•Spanish speaking mothers want pamphlets in English & Spanish “I want to make
sure I get all the information.” “I need one in Spanish to show to my family.”
18% of U.S. households do not speak English at home. (2000 census)
Lessons Learned from Providers
• Not interested in time- or resource- intensive training
programs
• Preferred short handouts, checklists, brief articles in their
professional organizations newsletters.
• Wanted to-the-point information to help them educate
parents more effectively.
Providers requested brief information in a handy
notebook to prepare them for conversations with
parents:
• a list with concise definitions of the diseases screened
• the specific diseases screened for in their state
• sources of additional information
Challenges in Teaching/Reaching Physicians
• CME for NBS is not a carrot
• Computers had limited use with most practicing
physicians (Family Physicians training
residents more likely to use computers)
• Material mailed from professional organizations
& the state health department would most likely
get to be read by the physicians.
Recommendationsto improve quality of NBS communication
Information needs to be more patient AND provider centered
• Parents and providers need to be involved in development of materials and the distribution plan i.e. what will be taught, when, where, how, by whom and how often.
NBS needs to be more systems –minded• Brief education at multiple times may be helpful What is the role of
office nurse, hospital staff?• Providers need to be more in the loop• Parent education needs to be convenient and practical for usual
practice• Professional organizations, state agencies, HRSA and affiliated
groups should collaborate more to prepare and motivate providersto educate parents
Provider Communication ToolsBrief Discussion Guide
Brief Information to Facilitate Communication with Parents
Provider Notebook to Facilitate Prenatal Parent Education
• Materials were mailed to 25 providers in 4 states (GA, LA, NM, TX) 32% FP; 24% OB; 8% Midwives; 2% NP
• Providers used the materials for one month with a total of 240 English-speaking and 130 Spanish-speaking parents (48% Medicaid)
Pilot to evaluate feasibility & satisfaction
Results of Pilot Parent Education Project
• 92% reported being highly satisfied with all of the materials
• 84% found the “7 Things” helpful; 80%were likely to use it on an ongoing basis
• 88% thought the parent pamphlets were relevant prenatally; 80% were likely to use them on an ongoing basis
Results of Pilot Project, contd.
• 100% found the quick reference helpful and thought it contained the right amount of information for them.
• 92% found state-specific screening information helpful; only 12% visited the state website listed.
• NBS education using the materials took 2-5 minutes.
Toolkits for State NBS Programs
• C.D. in “jewel” case:- Electronic-templates of English and Spanish parent
pamphlets that states can tailor to meet their needs- Electronic-pictures of parents and young babies
• Printed guide to developing user-friendly NBS pamphlets
• To be distributed by the NNSGRC
NBS Education Ideal
Parent-centered materials/messages delivered 1st
prenatally
Messages given multiple times
OB and pediatric providers more involved in the system
Provider centered “need to know”/ “need to do” education
Public awareness campaign may be needed
Quality control to ensure consistency and efficacy of education